Hi MrsD, did I get you right that sarcoid, based on the normal level of my ACE, is ruled out at this time?
Thank you.:hug:

40% of Sjogren's patients are sero-negative....that is NOT minimal.

Maybe you need a second opinion from another rheumy.

This is interesting. I have something somewhat similar called livedo reticularis. It started on my legs and would go away when laying down but re-appear when sitting standing. Then it spread to arms, and now covers front/back of legs, arms and torso. It still fades to some extent when I lay down, and is profound at all other times. It is caused by vasospasms of the medium sized vessels in the skin and is an autonomic dysfunction according to my neuro and cardio at Hopkins. Although not prescribed directly for it, vaso-dilators and calcium channel blockers will reduce it slightly. One other interesting thing is that cold makes it worse...unlike yours where warm water makes it worse.

I agree with you. I am looking for an article about the 40% statistics so I can show it to her but couldn't find yet.

I have been thinking about changing a rheumy but it takes awhile to get a new appointment for new patients. I will see her first while I get a referral for a new rheumy.

Livedo is more like a net like presentation in appearance.

http://www.picturesdepot.com/medical...ticularis.html

http://en.wikipedia.org/wiki/Livedo_reticularis
Mine does not look like this:
http://www.google.com/imgres?q=lived...r:18,s:0,i:158

But when I was younger, I did have some of this veining on my hands at times. But no longer at all. I have nothing on my hands now.

Mine has that look only where it breaks up as the unaffected skin starts. Cold does not bring mine out. Mine seems to be affected by heat.

I never had it until I developed that reaction to the water upNorth. We used to only go there in August (we shared the house with an aunt, who has passed on). When we started using the property in June, I'd get this red rash on my arms when I washed dishes...only on the left arm. It would go away in about 2 weeks and I'd be fine the rest of the summer.
Then one year I had a bit of too much sun too quickly before my tan got going, and I flared up with a photosensitive reaction.
My ears, arms, knees, were blistering, burning. Not alot of sun but my son and I were in the water that day alot. That time I had a fever, and felt really ill. Since we now had zebra mussels, and I am allergic to raw seafood, I assumed that was the culprit. So I contacted the professor at WSU who specializes in zebra mussels, (new invasive species) and he suggested the algae link. So I have found online articles about blue green algae and toxins that irritate the skin, etc.

My skin redness is fading a bit finally, but is more solid and redder, in appearance than livido...but yes, it is similar. It can resemble a sun tan or sun exposure at times. For a while I thought it was
tinea versicolor, but antifungal treatment has no effect on it.
I've tried menthol too... because at one point I was using Salonpas on my wrists for my carpal tunnel, and the redness stops where the patches were! When I tan, this red area tans darker than the normal skin areas too..and that is true for tinea.

The Biotin seems to be helping with it. I think with longer use it might actually fade more. I have been thinking that the severe skin reaction I had, destroyed the top layers of skin so that the deeper layers are more visible now. I don't have this anywhere else, not on the legs, etc.

Also no one else gets this upNorth from the water...only me.
I found an interesting photo once of photosensitive contact dermatitis which was very similar (to myreaction to the algae bloom). Also the photos of pellegra are similar too. I have a little patch of redness near my neck as well (where the sun hits). But niacin does not change my skin rash at all. Mine is not dry or itchy either. It was activated by UV exposure initially however.

I've had alot of autoimmune testing over the years. Two big panels 10 yrs apart ..nothing. No Hashimoto's antibodies either.

I am thinking mine is similar to livedo. The mucinosis factor sounds like the hypothyroid angle...deposition of mucin in the skin.
http://medical-dictionary.thefreedic...y.com/myxedema
I do have the edema factor. It is one thing the levothyroxine has not helped much.

I was referring more to the features, like the blanching/fading when laying down and prominent when sitting/standing as well as blanching with pressure. And the temperature sensitivity...yet it's the opposite swing of temp that causes an increase reaction.

You mentioned both arms: Is it in the same area of each arm? How big of an area...and has the area increased over the years?

Mine is the typical lace looking appearance of livedo. It did fade slightly after starting Cardizem, but now it's just as bad as it used to be.

That is so strange that it's brought on by the water up north...yet no one else has a problem. I wonder how the Plaquenil would help it...the mechanics behind it?

I have never found doctors respond well to articles brought in that disprove something they have said. They do NOT like being shown they are wrong.

Once they get in their mind a specific opinion on a condition, it is hard to swing them.

You'd be better off getting another opinion.

I'm sure I've seen it written also, but my doctors at JH are they ones that continually recite this fact.

It is stated in the book, "Body out of Balance" by Fremes & Carteron and numerous articles by various physicians, but it would take some time to find them all.

I have noticed some changes/lightening with the magnesium lotion too. I apply it on my arms, where the skin is thinnest for best absorption and also on my inner wrists. But this effect only lasts a day or so.

REM is deposition of mucin in the deeper layers of the dermis.
Once there, I'd suspect it might be for life. Mucin is also deposited in patients with hypothyroidism, in other tissues, and is one reason for compressive nerve issues in wrist and ankle.

I think my severe skin rash may have revealed what was already beneath the skin. I'll know more as time passes, as I think the Biotin is helping my skin regenerate some.

It started on my left arm, because I pump the water with my right doing dishes and the left gets more wet. The 3rd year of June vacations I had the severe reaction I mentioned above. Now hubby does our dishes up North so I won't get it again. The time period for my reactions was late June to early July.
After that I am safe in the water. We've been going up there in late
July for the past 8 yrs or so now, so I miss that time period with the irritating water.

This is definitely a unique presentation (only certain times in June/July, warm water, etc, etc). But I agree, if it's not bothering you and doesn't seem to be spreading, weeping, etc, then why put yourself through anything, whether toxic or not.

Yes, I agree... but... this type of thing can be a signal pointing to a more serious condition. But I've had it so long now, even that worry is less. It really isn't even that terrible to look at. Looks like a sunburn sometimes, and other times it is faint.

My hairdresser remarks on it... now and then. Wait til I tell her next week about the REM! LOL we'll get a laugh out of it. She is a very cool gal.

After all hubby has his psoriasis...and that is far more icky than my redness! LOL ;)